What life is like living with multiple sclerosis at 20

What life is like living with multiple sclerosis at 20

Looking at Amber Reeves, you would probably suspect she’s a regular young woman getting on with her life.

But she has what she describes as a “hidden disability”, which doesn’t get recognised when she’s out and about.

Amber is living with a disease that could eventually leave her unable to walk, and if she tries to do too much, it can leave her severely fatigued for days.

One time, the 20-year-old woke to find she had lost her vision – she went to A&E, which is when her diagnosis began to unravel.

Amber Reeves

Amber was told she had multiple sclerosis in October, but doctors think she has had it since she was 15.

Exactly why someone develops multiple sclerosis (MS) isn’t known.

MS is an autoimmune condition, which means your immune system mistakes part of your body for a foreign substance and attacks it.

In the case of MS, it attacks the myelin sheath in the brain and/or spinal cord – which is the layer that surrounds your nerves. Their job is to help electrical signals travel from the brain to the rest of the body.

As a result of the attacks, the sheath becomes inflamed, causing lesions.

MS attacks the myelin sheath in the brain and/or spinal cord – which is the layer that surrounds your nerves

Amber had always felt there was something not quite right with her health, as she would get increasingly tired, which was then accompanied by pains in her head. They began to get so severe they would make her sick.

Symptoms lead to the university student being “fatigued 24/7” – to the point she physically had no energy left in her body.

After she temporarily lost her vision, a lumbar puncture and an MRI scan revealed that Amber had a scarred brain and spinal chord as a result of the lesions caused by MS.

But despite her diagnosis, Amber is hopeful of achieving her goals of completing her management degree and owning her own business.

“I wasn’t myself for months after I got my diagnosis,” said Amber, who lives in Brixton with her family.

“It was difficult for my parents and sister to understand and go through, too.

“I only knew one other person around my age with MS – they couldn’t walk, so I thought that I wasn’t going to be able to walk, either.

“I wanted to live life like a normal 20-year-old, I just wanted to go to work and study but I couldn’t, I needed breaks. I’m tired 24/7 – the fatigue is different, people don’t understand – I get so drained there’s nothing left in me.

Some of the most common symptoms of MS

fatigue

vision problems

numbness and tingling

muscle spasms, stiffness and weakness

mobility problems

pain

problems with thinking, learning and planning

depression and anxiety

sexual problems

bladder problems

bowel problems

speech and swallowing difficulties

“Recently I went on a hen do and then shopping with my aunt – the next day I physically couldn’t get up.

“At first I denied my diagnosis, but it began getting worse. My walking is affected now and if I have to walk for a longer distance, I need to hold onto someone’s arm.

“I get quite a lot of cramp, fatigue, spasms in my legs and generally have low energy.”

Amber will venture outside when she’s feeling able to, and as she is registered as disabled, she’s has a car permit and uses disabled facilities.

But she said she feels judged and gets ‘looks’ off of people when she does make use of the facilities there to help those with extra needs.

“People don’t see me as disabled – many of my symptoms are invisible on the outside so it’s almost like I have a hidden disability.

“I feel like I have to justify myself if I use a disabled toilet or a parking bay – some of the looks I get [are horrible]. I just want people to understand that not all disabilities are visible.”

Amber has the relapsing-remitting type of MS, which generally follows a pattern where symptoms worsen and then improve. Eventually, it may progress to secondary-progressive MS – a more aggressive form of the disease.

In the hope of slowing down her MS and also helping others, she’s one of just 15 people in the UK undergoing a drug trial.

Ocrelizumab is an experimental drug which is being developed as a treatment for relapsing remitting and primary progressive MS. It is taken as an intravenous infusion every six months.

Amber with Andrew Hannah (her stepdad and carer)

Amber is urging anyone else, and particularly young people, to talk to someone and get support after their diagnosis.

She added: “It is scary but you need to speak to people, there is support out there. Initially it was a huge shock for me, and I was really depressed, but you have got to live your life.”

Every week, around 100 people are diagnosed with multiple sclerosis in the UK. Understanding MS is hard enough as an adult, but for the increasing numbers of young people affected by MS, it can be huge challenge.

The MS Trust has released new research findings which show that increasing numbers of young people are being diagnosed with MS. Almost three quarters (70 per cent) have experienced symptoms before the age of 20.

It’s said that young people are feeling lonely after diagnosis and that there is a lack of engaging and accessible information to help understand MS.

To help change this, the MS Trust is launching a new YouTube channel this week, called MSTV.

The channel will feature a range of different videos about MS, and star young people who are affected by MS in some way. The aim is to help young people get to grips with the condition, whether they have it, or are related to someone who does.

For more information, click here.

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